Conferencing while chronically ill

What I’ve learned from giant scientific conferences

I recently attended a conference with 27,000 other geoscientists. We took over an entire conference center and parts of three nearby hotels, covering almost 3 city blocks. I was underprepared and didn’t take care of myself as well as I could have, so I decided to write up some of my recommendations so that you don’t make the same mistakes I did.

Most of these tips are specific to chronic pain and fatigue, because that is what I’m familiar with. Some of them might also apply to anyone who experiences cognitive dysfunction or concentration fatigue for other reasons, or who has other disabilities. They may even help if you are pregnant or recovering from an illness.

Smiling through the exhaustion! Photo by Fatima Husain

That said, this is not meant to be an all-encompassing guide, so please let me know if you find other resources on attending conferences and large events with a disability so that I can include them here. My email is gserratomarks@gmail.com.

Also, even if you don’t read this long list, please scroll all the way to the bottom to check out the other resources that people have shared!

Before you go

• Ask for accommodations if needed. Try to be as specific as possible about what you need and how the organizers can best accommodate your disability. For example, you can ask for a chair next to your poster or a railing on the steps to the stage. Make sure you also include dietary restrictions, or find out what they will be serving so that you know how much food to bring. I try to remind myself that I am not asking for special treatment or being needy, I am just asking for what I need to access the same information as everyone else.
• Pack in advance so you don’t forget anything important. I find that if I rush and pack the night before I leave, I forget more than if I give myself a few days. If you don’t use a mobility aid, I recommend that you pack into a rollerboard suitcase, rather than a shoulder bag. That way, you won’t have to put so much of a strain on your shoulders. However, if you do use a mobility aid and need both hands free, a shoulder bag will work better.
• If you need to travel with liquid over 3.4 oz (such as protein shakes, medical formula, medication), be prepared for a full pat-down at TSA and build in extra travel time for it.
• Bring your usual medications for all the days you’ll be traveling, PLUS two extra days of the usual medications just in case — all packed in your carry on bag, not your checked luggage, which can get lost. I also recommend that you bring your rescue or emergency medicine in case you have a flare during your conference. It’s better to have it with you and not need it than to leave it behind.
• Wear comfortable, supportive shoes. No heels, and probably no flats! You’ll be walking and standing a lot, so you might as well keep your feet comfortable. If you sometimes use braces or compression garments, bring them with you.
• Choose your lodging strategically. Try to find a place to stay that is near the center or is easy to get to on public transportation. You can also try to stay with a friend or in an AirBnB to have access to a kitchen (see the next point about dietary restrictions).
• Bring food you can eat and enjoy, especially if you have dietary restrictions. I like Quest bars and Pro Bars because they have protein and calories. It is also helpful to scope out grocery stores and other places to buy food in advance of traveling.
• Request enough funding to cover an extra night in the conference location so that you have time to adjust and recover before the conference begins. You can also consider requesting funding to cover more flexible travel reservations (which tend to be more expensive) in case you need to cancel or change your plans.
• Check the weather and bring layers. Planes, conference centers, and hotels tend to be chilly. You might also consider hand warmers or other extra warm things.
• Put your emergency information into your phone or in a well-marked pouch in your bag/purse. You can use the Apple Health emergency information function if you have an iPhone or Medical ID: ICE on Android (thanks Rebecca Smith!). If you have friends you feel comfortable talking to about this, tell them where the information is and when they should use it.
• Don’t over-schedule your days. Build in time for resting, eating, and catching up with friends. Protect your break time: don’t schedule other things over your breaks. And remember that you absolutely don’t need to attend every session or every talk!
• Consider getting a badge/pin/other form of signage to signal that you might be tired, not in the mood to chat, or struggling. For example, there are “Cancer on Board” pins or “please offer me a seat” pins. Thanks to Tamsin Edwards for this suggestion.
• Prepare a response for questions about your disability, health, or other accessibility questions. For example, what will you say if someone sees a mobility aid or brace and says, “Oh no, what happened?” What will your response be if someone makes a joke about you sitting when everyone else is standing? Also, is there anyone you can honestly talk to about how you’re feeling? It can be exhausting to constantly say you’re feeling ok when you’re really not.

While traveling

• Upon arrival at a large airport, look at a map and plan your route from gate to gate or from security to the gate. Will you stop for food/rest, or keep going until you make it to your gate? I’ve tried both techniques and found that, if I have enough time, it helps to stop before making a really long trek to the gate.
• Unpopular opinion: caffeinate yourself. I find that caffeine really helps me get through the travel process and adjust to different timezones. I know other people don’t tolerate caffeine, but if it works for you, don’t be afraid to use it as a tool.
• If you’re flying, there’s no shame in pre-boarding. I usually say something like, “I have a health condition that makes it difficult to stand for long periods of time. May I please pre-board?” I recommend that you think about what you are going to say ahead of time if you are new to requesting accommodations, as it can be scary at first.
• Stay fueled! That includes drinking water, eating as much as you normally do (or more), and resting when you need to. You can bring a reusable water bottle and track your water intake to make sure you are drinking enough. If you hate drinking water, herbal tea has the same hydration powers!
• I have really mixed feelings about airport wheelchairs, enough to write a whole post on those alone. The short version is that I think it is worth trying an airport wheelchair once to see if you find it helpful. Personally, I found it frustrating and really demoralizing. Unless I am having a really bad day, I walk on my own and take breaks as needed. That said, you might have a different experience!

At the conference

• Take notes so that you will remember better and stay more engaged, especially if you have brain fog. I also know when I’m getting tired or my pain is increasing dramatically when my handwriting becomes illegible. Try to figure out what tool works best for you. If you are unable to take notes, consider asking the speakers or conference organizers for copies of the talk. You can also ask friends or colleagues for their notes.
• Don’t be afraid to clearly communicate your limits. I was invited to go on a tour of a building that was a 20 minute walk away, and I knew that if I walked there I would have no energy left for the actual tour. I told my two friends, “I can’t walk that far. Can we take an Uber instead?” They were happy to share the ride with me, and I was proud of myself for choosing an easier route. If you have funding from your institution to cover your travel, ask if they will cover trips like this!

You might be the only one sitting during a poster presentation (I was), but that’s ok!

• Take a break when you feel yourself fading. Keep up on social media or a live stream if you don’t want to feel left out. Remember that it is better to miss out on a talk or two than to crash completely and miss a lot more! I know this is easier said than done, and I don’t usually take my own advice. But do your best to listen to your body.
• When presenting a poster, bring a chair up to your poster and sit on it instead of standing. It will probably feel awkward at first, but I have found that it is always worth it to save the energy and pain. I’m a much better presenter when I can sit down because I am not exhausted or struggling to ignore pain.
• Giving a talk is scary enough without having to also manage your health condition. The best advice I have for this is to be prepared. For me, that means having a chair or stool nearby for any presentation, and actually sitting in it for any talk longer than 20 minutes. Practice your presentation ahead of time and see what you prefer. If you will be sitting for a talk, you might need to ask for a different microphone setup, because mics on podiums might be too high up to reach.
• Here are two strategies for extra activities at night: #1: Skip evening activities in favor of sleeping. It can be disappointing to miss out on things, and I don’t have any good ideas for managing that FOMO. I just try to make it to what I can and not push myself too hard. Usually the night activities are less important to me. #2: Skip lots of afternoon stuff so that you can make it to an important evening activity, like dinner with a mentor! Thanks to Dr. Marianna Linz for this perspective.

Not exactly the most accessible space.

• Make yourself as comfortable as possible. This includes putting your feet up on a chair, taking a cushion with you, getting up to stand in the back of the room, or anything else that helps you feel better. Thanks to Tamsin Edwards for this suggestion.
• Hydrate and maintain appropriate calorie intake! Remember those snacks you packed before you left home? Make sure you put them in the bag you take to the conference each day! I try to bring at least one extra large snack per day, in case I share or am very hungry. I know that drinking water and eating are the first things to go when I’m stressed, but they’re also the best way to keep myself functioning. If you have good friends at the conference with you, ask them to help you make sure you are eating and drinking enough. I know I have mentioned this already, but that’s because it’s really important.
• Avoid eating or drinking anything that makes you tired or feel less than great. For me, that includes alcohol, dairy, and wheat. I don’t drink at all during conferences because it just makes the whole process harder for me. I have seltzer with lime at cocktail hours and try to find fruit for dessert. If you have dietary restrictions, stick to them as best as you can while still getting enough food.
• Keep track of any frustrating ableism (even small things) that happens so that you can either respond to it, address it with conference organizers, or let it go. I find that if I don’t make a note of it on paper or digitally, I just stew about it.

After the conference

• Send a short note to any speakers you really liked hearing from, especially if you were unable to go talk to them after their presentation.
• Consider making recommendations to conference organizers or providing feedback about your access to the meeting. This can be exhausting, so you can also enlist friends to make requests or give feedback.
• Make a new packing list that includes things you wish you had brought so that you will be more prepared for the next time.
• Recover as much as you can. For me, that consists of spending as much time horizontal as possible for at least two days after I return from a conference.
• Congratulate yourself and be proud of what you accomplished! No one makes it to everything they wanted to go to, or is able to pay 100% attention to every single presentation. You did your best and that is enough.

Other resources:

• Attending EGU in a wheelchair by Robin Wilson
• Resources for Accessibility at Conferences by Divya M. Persaud
• Conferences & MS by Stephanie Zihms
• FeistyFoxFilms conference survival guide
• Mary Q. Confesses conference guide